New left big toe weakness

[spidercomrade]

Hello, I'm a 20 year old college student. I have had 6 long months of inexplicable symptoms, many of which don't match up with ALS (brain fog, pressure in my head, general malaise, odd vision feeling). However, I have had scattered twitches/fasciculations for 4 or 5 months now, and just a few days ago I realized that my left big toe is significantly weaker than my right when I raise it. I'll admit, I'm really scared. I had just barely come to terms with the fact that the twitching was probably BFS or anxiety. I come here hoping someone will tell me that the weakness will go away, but the combination of twitching and now weakness makes me not very optimistic.

Anyway, thanks in advance for your time.

[Peg B]

HI,

It sounds like you have yet to go to a doctor. Please do so. There are many explainations including diet and reactions to food like wheat or milk products. Fibermialgia and others are possibilities. Please see a doctor. Best Wishes, Peg

[spidercomrade]

I have been to many doctors, unfortunately. I've been to 5 or 6 physicians since April, they told me I had allergies and/or anxiety. When one finally scheduled me an MRI, I was told that I had a 3cm mass in my head and I needed to see a neurosurgeon who knew about chordomas (fatal malignant bone tumors). After 2 weeks I got more tests and was told I had a birth defect in my skull, fibrous dysplasia, and that it was benign and most likely wouldn't increase in size. I'm going back for more scans of that in November. I was referred to an otolaryngologist to see about my ears and balance, everything checked out.

Anyway, every doctor I've seen has given me the old "walk on your toes, walk on your heels, squeeze my fingers" test. I wouldn't even worry about my toe except I have also been having fasciculations/twitches since April/May. The combination scares me. Yesterday at my most recent appointment with a physician here on campus, I showed him the toe and he said something like, "I don't have an explanation for that right now."

[Peg B]

Hi,

Wow! I am sorry. I did not know all that stuff existed. I thought I had arthritis getting worse and restless leg symdrom and a broken or something finger (that atrophied). It started in 2002 and I was first DX with ALS Oct 31, 2006 and now it might be MMN, which I am being treated for. I knew about ALS but not MMN. It really is a wonder the Docs can pinpoint anything. I hope you find out soon and I hope you do not have ALS. I will include you in my prayers. Sincerely, Peg

[spidercomrade]

Hello, thank you for your concern. I think maybe I'll just try not to worry about it. I have been told more times than I can count that I suffer from anxiety and that it's causing all my problems. I have no idea what's wrong with my toe but hopefully it's fine.

[spidercomrade]

Still have the same symptoms. Pretty scared. Anybody else with any ideas? I'm only 20 years old...

[shopathonic]

Have you been to a neurologist who specializes in neuromuscular diseases? If not, you might consider calling the nearest university teaching hospital to find out if there is such a specialist on staff who takes your insurance. I notice that you're from Pittsburgh, so, if you haven't already called the MDA ALS clinic there, that might be a good place to start. Heres the contact info:

MDA/ALS CENTER AT THE UNIVERSITY OF PITTSBURGH MEDICAL CENTER (UPMC) PRESBYTERIAN
(412) 647-1706
(412) 647-8398 FAX
E-mail: lacomis@upmc.edu
David Lacomis, M.D., Director
200 Lothrop Street, F878
Pittsburgh, PA 15213

[spidercomrade]

I'm not really in a position to be visiting doctors... I'm at school currently. I went to the university health building about all the other problems I'm having and mentioned the weakness, the doctor said he had no explanation at the time.

[spidercomrade]

I'm hoping there's much more likely explanations for this than ALS...

[shopathonic]

Is it lack of time or lack of finances that prevents you from seeing a proper specialist? With all due respect to the doctor at the university health building, the one you saw is not likely to have the kind of specialized knowledge needed to diagnose your condition accurately. I know that you're worried about this situation--but you're not going to get any definitive answers on an Internet chat room--moral support, yes, but no clearcut medical answers. Nor will you get such answers from a nonspecialist at your university health service. The answers you seek can come only from a highly specialized neuromuscular expert who has examined you in person and run any necessary tests. I urge you to call the MDA/ALS center in Pittsburgh, for which I have already provided the contact information above. I'm sure they will find a way to accommodate you--you might at least call to find out what kind of arrangements or considerations they can make for you--I doubt that they would turn you away because of finances. That is the best place in Pittsburgh for getting the proper kind of workup that can rule in or rule out any of the conditions you're worried about. If you don't go there--or if you don't go see some other highly qualified neuromuscular-disease specialist--you're just going to find yourself overwhelmed with doubt and anguish.

[spidercomrade]

I'm 3 hours away from Pittsburgh.

[shopathonic]

Are you in Pennsylvania? There only two MDA/ALS clinics in the state--one in Pittsburgh, and one in Philadelphia. You can find a complete list of MDA/ALS clinics around the country at this URL:

http://www.als-mda.org/clinics/alsserv.html

Alternatively, you should ask your college doctor to refer you to a nearby neurologist--not just any neurologist, but one who specializes in neuromuscular diseases. If your doctor does not know of one, ask him/her what is the nearest university teaching hospital. You could call that hospital's department of neurology and find out who their neuromuscular specialist is. If you don't see a neuromuscular specialist, it's going to be hard for you to get a definitive opinion about--or diagnosis of--your condition. It would certainly be worth a bit of a trip to a facility where you can get some definite answers.

[Jeliota]

By "[my] left big toe is significantly weaker than my right when I raise it" do you mean that your left big toe won't go as high as your right big toe?

[ltr]

I don't think all of the MDA clinics are on the website. I'm pretty sure there are more than two MDA/ALS clinics in PA. Annmarie goes to one at Hershey. I know mine is an MDA/ALS Clinic and someone told me it wasn't listed. Try just putting in your zip code on the MDA website and then you can call your local chapter. I know it's tough when your at school, that's when all my problems started, but take the time to get an appointment setup maybe for your next break. Are you on meds for your anxiety, that will always help some. Good luck.

[spidercomrade]

ltr: Doctors have been telling me I have anxiety since April, when I first went to see one about my symptoms (feeling of pressure in my head, "brain fog", tiredness, lightheadedness)... first I was given Ativan (used up the 20 pills they gave me), then Lexapro (unpleasant flu-like side effects), Klonopin (still use it on occasion) and Wellbutrin (have been taking daily for 7 or 8 weeks now). I first noticed scattered occasional fasciculations after I used up the Ativan, which I took to be withdrawal from the drug, since it's a muscle relaxant. I still have scattered fasics which only appear when I'm at rest and go away if I contract the muscle.

The fact that I had these other symptoms first and still have them makes me want to think that the cause of my problems is something other than ALS.

Jeliota: yes, and also doesn't withstand as much resistance as the right toe.

shopathonic: I am in central PA right now, so Philly and Pittsburgh are both about equally 3 hours away. I hesitate to go to any doctor in the middle of school because I know it'll mean another long string of visiting doctors and getting tests and not getting answers. I have been in and out of hospitals and doctors' offices since April, poked and prodded and scanned and told (falsely it seems) I have cancer. I know that if I do go to a specialist and I am told it's ALS, there isn't anything I can do about it anyway. I would rather labor on with the hope that it isn't ALS than be told that it is; I can attest from my experiences earlier this summer that the only thing worse than thinking you have a brain tumor is being told you actually do. It's easier to try to convince myself that this is just another symptom of what was already wrong with me, Lyme disease or hypothyroidism or something. I thank you for your suggestions though, and I will keep your recommendations in mind when/if I do seek more definitive answers.

[spidercomrade]

ltr: I have been on anxiety medication since I first went to doctors with my symptoms (feeling of pressure in my head, "brain fog," tiredness, lightheadedness). I was prescribed Ativan, when I used up. I felt no better so I was given, by a different doctor, Lexpro... it caused bad flu-like side effects and I gave it up since I was fairly certain my problem wasn't anxiety. Later I was given Klonopin by an otolaryngologist, which I still use occasionally. Finally another physician prescribed me Wellbutrin, which I have been taking daily for 6 or 7 weeks. It was after I finished taking the Ativan that I first noticed scattered occasional fasciculations, which I still have; I chalked them up to benzodiazepine withdrawal, since Ativan is a muscle relaxant. I'd still like to believe that, since I had several other symptoms before any weakness, there is another explanation than ALS.

Jeliota: yes, and it can't withstand as much resistance. I can't lift the toe of my left shoe up as much as my right due to the toe weakness.

shopathonic: I'm in central PA, 3 hours from Pittsburgh/Philly. I appreciate your suggestions, and I will keep them in mind when/if I decide to go see more doctors. The problem is, I have been poked, prodded, scanned, told that I have cancer (it seems I don't) and prescribed a pharmacy full of medication since April. I have lost faith in doctors' abilities to find out what's wrong with me, and I know that if it really is ALS, knowing won't help. It's easier to labor on believing that my problems are something like Lyme disease or hypothyroidism (my blood test showed a TSH level of 3.48, in the hypothyroid range by some endocrinologists' reckoning) than subject myself to a whole battery of new tests while I try to make my way through college. I know from experience this past summer that the only thing worse than thinking you have an inoperable brain tumor is being told that you do. I want to play the odds here... I know that my chances, as a 20 year old, are something like 1 in 200,000,000 that I have ALS... so I can only hope this is something else.

[CindyM]

Hi Spidercomrade. I'm betting that you have something treatable. Maybe it is just wishful thinking from a woman who has a son your age and I am not a doctor but doesn't it make sense that maybe the tumor could be sitting on some compartment in your brain that regulates the nerves?

When you do go to a doctor make sure it is at a large teaching hospital. You get better treatment and they have better resources. JMO. Cindy

[spidercomrade]

Apologies for the double post, thought I had lost my post the first time.

annmarie: I am closer to Hershey, as I am in State College. However, I have no good way of getting there... and I have classes every day

CindyM: I don't have a tumor; after more thorough scanning, the neurosurgeon told me that I have fibrous dysplasia in the base of my skull. This is a weakening/expansion of bone that stops when the bone stops growing. I don't believe it should be causing any symptoms. I spent my summer in and out of UPMC, so I have been to a teaching hospital.

I hope you're right about it being treatable. :)

[CindyM]

I hope so too!

[spidercomrade]

I mostly did come here hoping that everyone knowledgeable about this sort of thing would know of diseases causing similar symptoms. Since I'm 20, the chances of me having ALS are so very very tiny. I think MS is more likely even.

I have heard of thyroidism causing myopathy. I don't know what to think about this though.

[ltr]

You're absolutely right, thyroidism, hyperthyroid or hypothyroid, can cause myopathy. A million things can cause myopathy, a virus, an infection...just so many things. There is a good chance of having a treatable myopathy as a one time thing. Have you had bloodwork or any kind of work up at all? I know you are worried, so maybe you could get the local college doc to order baseline blood work.

[spidercomrade]

I have had blood work, my TSH is 3.48, which is elevated according to new standards of hypothyroidism. The university health services consider .5-6 as the acceptable range, however, so they say I'm fine.

I'm in State College, PA.